We Are in This Together

“It is in our best interest to remember that we are all the same.” ~ Barb Rentenbach in her book, I Might Be You.

One of the most insidious and destructive messages parents are given about their Autistic child is “the list.” I am referring to that list of deficits we are given. The list that enumerates all the reasons why our child has earned the “autism” diagnosis. It is a list that divides. It sets us a part from our child. It makes us question our maternal instincts. It makes us wonder what we did wrong. It is the list that becomes our to-do list. A list of things we now set out to “fix”. Or so this was my experience when my daughter, Emma was first diagnosed.

That list, filled with judgment, a critique of my not-yet-three-year-old child, the same child that just moments before, I knew was different from what I expected, different than my son, yet still was a part of, was now branded with “other”. If we are going to make such lists, I think it only fair the “evaluator” and all members of the human race be given similar critiques. I would be curious to see how each of us stands up under such scrutiny. Let us be evaluated by someone who does not share our particular neurology. Let us each be judged by another – another who deems themselves superior. Let’s see how well that plays out.

“Loneliness is the most predominant side effect of our unique design. Many times, autistics revert to isolation by default rather than preference. It is infinitely easier to back away and not try to be included instead of oafishly stepping in and attempting to convey you intend to be a part.” ~ Barb Rentenbach in I Might Be You.

Have you ever felt like a fraud? Have you ever said something to someone only to realize you said the wrong thing? Have you ever been in a social situation and left, wondering why you feel uneasy, upset or just sad? Have you ever spent time in the presence of a group, yet felt lonelier than had you been alone? Have you ever had the thought that if people really knew you, they wouldn’t like what they found? Have you ever felt separate from, less than, not good enough? Have you ever felt critical of the way you look, the shape of your body, the size of a particular body part and wished it were different? Have you ever thought if only that part was smaller, larger, different, if only the number on the scale was less, if only your hair was lighter, darker, straight, curly, your skin was a different shade, your height… Have you ever thought if only X was different, I wouldn’t feel this way?

Remember a time, no matter how brief, when you felt that magical euphoria of connecting with another human being? That moment when you felt the wonder and bliss that only comes with friendship and love, the beauty of connecting with another? Remember what that felt like? Wasn’t it beautiful? Wasn’t it unlike anything you’ve ever felt? A kind of anything-is-possible feeling? A feeling of all being right with the world, that joy of knowing we belong. Who among us has not experienced both? Who among us has not felt the horror of feeling separate from, the worry that we are somehow damaged, not right? Who among us has not felt the inextricable sadness that comes from feeling we are all alone? Now add an entire society, a whole group of people, all of whom have decided we are “less than”. Feel what that feels like.

Go back to the memory of bliss, of joy, of connection. Feel the vibrancy, the exuberance that comes with that. Which do you choose? Would any choose differently? We are all served by remembering we are more alike than not.

“Reach out and connect with those who may be struggling with separation. It takes just one person to care to change a life for the positive. Be that for someone.” ~ Barb Rentenbach in I Might Be You.

Emma, Barb & Lois the week we recorded the audiobook of I Might Be You

32 responses to “We Are in This Together”

Oh, wouldn’t it be nice if autistics would be the one to diagnose other autistics? It would be so much more positive than the death sentence we practically get now. It would be more like a “welcome to the club” experience.
I also wonder when the norm is going to stop being the norm because of the growing number of individuals diagnosed with one thing or another. Yes, if we were all judged and diagnosed with something, wouldn’t we all be more accepting of everyone?

I personally love using the Ziggurat Model and the Comprehensive Autism Planning System together for comprehensive evaluations and practically putting supports in place for kids on the spectrum. I’ve used it for myself too 🙂

I loved this one so much! Ahhh the list. Yep we got that one. With every evaluation comes a list. It’s hard but eventually you notice you don’t care too much what’s on the list. You just live. If only there was a better way to do it. The peace and comfort we all would have might even help our children more then a todo list.

An exceptionally insightful, wise and wonderful post. I think it would make an excellent opening chapter of your book (wink, wink). The idea of “the list” is not only the point of embarkation on the journey of autism, but the emblem of everything that separates all of us. We are all constantly making and updating lists of everyone we encounter. The longer the list, the more “other” the person. This is the source of all hatred, loneliness, fear, aggression, war, jihad, cruelty, segregation, bigotry, racism, sexism, agism, homophobia, bullying and for all of us — isolation.

I am also greatful for Jess and you leading me to Barb’s book! Ariane..I am listening to you read it on Audible everyday. It is wonderful! So amazing to hear from a non-speaking autistic….makes me wonder all that my girl (who speaks…just not very functionally yet..she is 6) has to tell me someday!! Gives me hope!

Candi! You wrote somewhere… FB maybe… something like – “I’m the one who comments on your blog!” and then I tried to find where that was written to reply, but couldn’t… so if this is the same Candi, just know I saw it and meant to say “YAY!” back!

I am bi polar and have felt many of the things you mention in your posts. Isolation and misinformation have been only two of the problems I have encountered and which drew me to your site. How similar some of the problems appear. I am writing a book based on my years dealing with bi polar disorder. I eagerly await you future posts re autism and send you courage to continue to inform in your very gentle way.

I’m not sure if you’ve seen this TED talk, but I thought perhaps you might find it interesting, it’s about love and being a parent to a child who, for whatever reason, might be considered to be ‘different’. I am autistic, but am not a parent, so I hope no-one will take offense as anything he says, as I’m sure none is intended : http://www.ted.com/talks/andrew_solomon_love_no_matter_what.html

Very well put. I often thought this year that the diagnoses we put on our children (some have multitudes of them) isolate them from us, just like you said. Suddenly they are not our precious love bugs but a project urgently needed to be intervened with. When we measure every ounce of “progress” and pin our child against the expectations of some authority (teachers, therapists, doctors) it is too easy to lose sight of the fact that they are only little and that the diagnosis didn’t change who they always were- just our perception of them.

I have read Andrew Solomon’s book and liked it – it is not a light read though. One thing I found interesting is that he says higher socio-economic mothers struggle more to accept their children with differences. Those who didn’t have much to begin with in terms of education and material possessions don’t expect much and are far less ‘disappointed’. I like your post as I often quip that if you put anyone under a microscope you would see blemishes and faults. It is well known that Tony Attwood who lives in my city says ‘Congratulations, you have Asperger’s’ when he diagnoses people.

Ha!
I am working my way through “Inventing the Feeble Mind: A History of Mental Retardation in the United States” also not exactly light reading, but fascinating and important. I’ll tackle Andrew’s book next!

You are so right about ‘the List’ becoming a to-do list. My solution is to create an ‘un-do’ list – a list of things that are amazing about your child & situations where things work really well. And focus on the good.

Oh the dreaded list I think every “special needs” parent gets one of those I’m pretty sure my mom got one too she still prays for God to “save me” whatever that’s suppose to mean she is yet to understand that there’s nothing wrong with me I’m just different.

When I mention my diagnosis, everyone asks me about “the list” and if the recommendations were any good. The idea that I wanted the label for community (and everyone else’s piece of mind – I already had that) is not even on their radar. Why would I have gotten a diagnosis if not to fix the “problem?”